Emotional and social issues for children with retinoblastoma and their families
Most children with retinoblastoma are very young at the time of diagnosis. Still, some children may have emotional or psychological issues that need to be addressed during and after treatment. Depending on their age, they may also have some problems with normal functioning and school work. These can often be overcome with support and encouragement. Doctors and other members of the health care team can recommend special support programs and services to help children during and after treatment.
Parents and other family members can also be affected, both emotionally and in other ways. The treatment center should evaluate the family situation as soon as possible. Some common family concerns include financial stresses, traveling to and staying near the cancer center, and the need for family members to take time off from work. If the patient or family members have concerns, they can be addressed before they become a crisis.
Centers that treat many patients with retinoblastoma may have programs to introduce new patients and their families to others who have finished their treatment. This can give parents an idea of what to expect during and after treatment, which is very important. Seeing another patient with retinoblastoma doing well is often helpful.
If needed, centers can also refer patients to special programs and facilities for the visually impaired. Most patients treated for retinoblastoma in only one eye will have normal vision in the unaffected eye, but they may have a cosmetic deformity in the treated eye. The cosmetic problems can often be lessened by treatment in a center with expertise in reconstructive surgery. Early intervention and counseling can also help address any psychological effects of changes in appearance.
Support groups for families of children with cancer can also be helpful. If you need help finding such a group, call your American Cancer Society at 1-800-227-2345 and we can put you in touch with a group or resource that may work for you.
Last Medical Review: 03/12/2015
Last Revised: 03/12/2015